Have you ever felt death immobilize you like a Gravitron ride, pin you with inertia and spin you relentlessly, rattling nausea through your chest until you might just combust into nothingness?
Have you ever held life in a ball of pure energy, stoked and whirled it in your arms while a violin screamed at the skies, while your feet kicked up dust with the drums and the sun winked awake?
It's strange, a year later. I am in many ways 'back to normal.'
And yet, here, now, death sits more prominently in my periphery, lurking smugly from the shadows. He’s always been there, I just never paid him much attention. Usually, it's easy to look toward the light. Toward life - toward color and movement and "somedays." But every so often, my gaze is dragged backward to an ominous darkness. One that intimates the flimsy character of our existence, and, then, of its absence.
I had never considered that my first six- month scan wouldn't be clean. I felt vibrant and strong, pumped with green tea and fortified by a budding community, purposeful work, and a healing body.
The first time around, I convinced myself, had been a fluke. One brought on by the unprecedented stress and anxiety of COVID and all the ways my life had been uprooted in its wake. Brought on by the hopelessness of injuries that seemed to never heal and the suffocating loneliness of social isolation. Unhelped by lackluster spiritual and creative practices and (light) self-medication in the form of beer.
This was a comforting story to tell myself, in any case.
That was why I was utterly surprised when Dr Koppell read my scan and announced that a follow-up scan would be necessary.
"The radiologist has noted a bit of enlarged tissue in an area where one of your masses used to be. It’s most likely just natural thymic growth after suppression, but to completely rule out a lymphoma recurrence we have to order a PET scan.”
My emotions glitched in a strange limbo between relief and devastation. "Most likely" seemed promising, but any possibility of a recurrence was distinctly concerning. Like many of my treatment milestones in the past year, this one was characterized not by straightforward, predictable sentiments but by the utter absence of emotional coherence.
For the next month, I would need to settle into this purgatory of unknowing.
By my second scan, my self assurance had dissolved. I felt wildly out of control. I paced around my office building in the sweltering heat while my MyChart result goaded me from my email inbox. I opened my gmail app and then quickly closed it. Don't check it, just wait. I’d been burned by misleading (or accurate but devastating) MyChart results before.
Dr Koppell wasted no time as she entered the room. “You have to get a biopsy,” she said briskly as soon as she sat down. “What? Why?” I spluttered, my chest folding in on itself. “Your scan shows some.. activity” she said, peering at me through her plastic safety glasses, “in the mediastinal area. It could still be thymic rebound but.. we will have to check with a biopsy before we know for sure. It could also be recurrent lymphoma.” She showed me the scan image, which depicted my chest area glowing yellow. “In a worst-case scenario, you would have to get treatment for recurrent lymphoma. This would be a different, much more aggressive treatment than the one you already had.”
She went on, and I heard her say the words “stem cell transplant” and “some people survive.” My insides turned to cold soup.
I knew about stem cell transplants. They obliterated your immune system with intensive chemotherapy and then kept you in hospital isolation for a month while your immune system rebuilt itself. Nurses attended to you in hazmat suits and the tiniest cut or contamination could send you to your death.
“In this scenario,” she continued apologetically, “you wouldn’t be able to get the treatment in Truckee. There is a center in Davis or.. you could go back to Seattle."
I took a shaky breath. “Ok, um, what do you think the chance is that it’s a recurrence versus the thymic thing?” She looked at me seriously. “It’s probably about 30 percent for both of them.” Besides the fact that I wasn’t sure how this math made sense, an equal chance situation wasn’t comforting.
Terror and disbelief tranquilized my cells, and as I stood up to leave, my body seemed to be made of both lead and cotton. Immaterial, but also inescapable. Praying to an organ I had never spared a second thought for – a small, diligent sac beneath my breastbone, a god offering 30 percent odds on salvation.
Later, I did read my MyChart. “Activity consistent with recurrent lymphoma." There was no mention of thymic rebound.
At work, I sat in my swivel chair and looked out the window. I started to write an email, then lost steam. The cursor blinked at me sadly. I went to the bathroom and sat on the toilet. I put my elbows on my knees and let the tears flow, drawing ragged breaths as they intensified. I thought about hospital isolation, about mouth sores and throwing up and feeling so weak I couldn’t get out of bed. I thought about moving out of Truckee - where would I go? Who would take care of me while I got treatment? I felt like a ticking time bomb, a vessel riddled with mutinous cells and plagued by early Judgment Days.
I realized I was terrified of death. Of course, I'd accepted the inevitability of death before, but I had always considered it with the blasé-ness of youth. It was theoretical, really, when buffered by at least 50 more years of life. I spoke of death frankly, with an enlightened conviction that unambiguous nothingness awaited us on the other side. It was the weak-minded who needed reassurance of continuity, of paradise after life.
But the first time around, I never really thought that I would die.
Now, abruptly, I was peering over the cliff, and realizing I very much did not want to be down in the abyss. The thought of nonexistence was simply unfathomable. I wasn’t ready to kneel before the world, wasn’t ready for my life to be packaged and sold as a tragedy.
I caught myself thinking about God. I vaguely envisioned myself tapping lightly on the cloud door of a busy man whom I had shunned for my entire life. “Um excuse me, do you have a moment?” I smirked at my own hypocrisy. Relax. You don’t know anything yet.
The week leading up to my biopsy, I can’t seem to loosen the dark, tangled mess of anxiety inside of my chest, and my inability to ease my body’s stress is a multiplying stressor. I’ve read too many articles about the insidious effects of chronic stress. Even if I don’t have a recurrence, I’ll probably develop some other disease as a result of all this anxiety I think darkly.
I can't enjoy the beautiful sailboat ride that I take with Jenny and her mom. I slump numbly on the deck while they chat over me to a progressively drunk ("what the heck, another pinot griiiggee!"), sundressed woman with diamond studs and blown out lips who loudly shit-talks her church for sending mission trips and aid to Uganda instead of to Rio Linda. At dinner, my BBQ tofu sandwich is damp with tears.
At work, emissions targets feel ridiculously long-term. Email niceties are absurd.
Where I do find relief is on the dance floor of a friend’s wedding, where for a few hours all that matters is the stomping, twisting movement of my body and the euphoria of the bodies around me. Celeste screams joyfully as she brandishes a bottle of tequila. Makeup is gleefully smeared across her usually bare face and rogue strands of hair fly as she bounds among her people, Birkenstocks peeking out from beneath her wedding dress. A crew of ski patrollers hoists her up into the air and then tosses her small frame toward the stars.
Then it’s biopsy day. In the prep room, Steve the RN keeps calling me “friend.” “How are you today friend? Do you know why you’re here friend? Can I get you anything friend?” I find this endearing. Anything is better than “ma’am”, which people have suddenly decided is appropriate for me.
Doctor Schlund is very bald and slightly bug-eyed. He listens to my lungs with a rainbow stethoscope that looks like it’s made out of silly putty (“oh,” he exclaims, “this thing actually works!”) and peers cursorily down my throat with his iphone camera.
“Ok friend, ready to go in?”
Steve wheels me down the hall on the procedure bed. While I’m waiting outside, the anesthesiologist sidles up beside me. “Ready for your margaritas?” She pushes some drugs through my hand IV and my chest instantly loosens. I melt back onto the bed and smile lazily. Another RN named Jess is putting on a radiation smock that is strangely flattering. It has a skirt and a little coat, both purple and subtly plaided. “That’s actually very cute” I slur, waving my finger vaguely at her smock. “Right?” she says, grinning and giving me a spin.
When I pry my eyes apart a couple of hours later, Doctor Schlund says the biopsy went well. “It’s a nerve wracking procedure though,” he says. “There’s a lot of tubes in there.” Uh yeah aren’t you like a surgeon? I think. Instead I say groggily, “Yeah, like Operation.” I picture Dr Schlund carefully removing a bread basket from my torso with a pair of toy tweezers. He grins. “Exactly like that.”
As it turns out, I don't have a recurrence.
Dr Koppell calls me while I’m biking home from work. I dismount and sit down in the dirt on the side of the bike path. My body feels uncoordinated as my cells seem to melt, finally abandoning the watch posts they have held vigilantly for weeks. Her voice is unemotional though slightly apologetic, perhaps, for all the stress she knows this has caused. Or maybe I just want her to feel that way.
"Now, I will want you to get another scan in another three months, as there is still a very small chance that…” I tune her out. I don't even want to know. I have three months to breathe.
At home, I drink half a beer, then pour the rest down the drain. I smoke a joint and try on the Burning Man garb that Erica lent me for my first Burn. I don a striped kimono and crank out some push ups, then cram a lion's head that I can’t really see out of onto my head and shimmy into a pair of shiny pink spandex booty shorts. I lie on the floor, looking through the tiny black mesh eyeholes at my ceiling.
Thank you, little thymus, you’re just a bit overexcited but doing great at your job.
As a matter of speech: thank god.
I am dancing to greet the sun. Before me, The Man stands proudly on his pedestal, watching over his playa-goers. A man with metallic gold pants, golden-rimmed glasses and dusty pink hair makes love to the violin while another man in rainbow snake-skin leggings and a sleeve of tattoos pounds the drums. A being adorned in a silver body suit of coin-sized sequins holds long rainbow flags to the wind, their pink antler headdress framed against the dawn sky.
A man in a red suit speaks soulfully to the music and then begins to sob, bowing his head toward the microphone while tears stream rapidly onto his hands.
The music is alternately soulful, frantic, orgasmic. It satiates an urgent craving I didn't know I had. I close my eyes and move. I move however my body feels called to. Move my whole being, take up space, feel myself vibrating, a vessel gathering and moving energy, receiving it, stoking it, radiating it.
I dance for no one but myself.
The sun peeks over the horizon and a cheer ripples through the pulsing throng as its rays race across the playa. We stomp our feet and raise our arms, celebrating the sun’s audacity to shine on us for another day. Celebrating our audacity to live.
*Cover photo by Sun Katayama